General quali̇ty of li̇fe after treatment acute lymphoblasti̇c leukemi̇a

ABSTRACT Objective: Improved outcome and predicted long survival for children with acute lymphoblastic leukemia (ALL) make the early and efficient therapy, access to the best center, quality of life, and psychosocial intervention more important. It is well known that quality of life is negatively affected in ALL survivors who are cured. The aim of this study is to investigate the social, physical, emotional, family, and functional factors that may affect the quality of life in children with ALL to find out how we can support their lives after treatment to provide better quality of life in our country. Methods: The study population consisted of children who were diagnosed with ALL and had been treated at Dokuz Eylül University and Uludağ University Pediatric Hematology Departments with ALL-BFM 95 chemotherapy protocol. We included children who had been completed therapy at least two years ago and were >4 years-old. The control group consisted their siblings at closest age and gender. The sociodemographic data of patients were recorded from hospital files. Patients and their siblings were evaluated with KINDL questionnaire for measuring health-related quality of life in children and adolescents. For 4-7 years Kiddy-KINDL Turkish version, 8-11 years Kid-KINDL Turkish version, 12-17 years Kiddo-KINDL Turkish version, and >17 years SF-36 questionnaire had performed. For parents of 3-6 years-old patients, Kiddy-KINDL parents questionnaire and for parents of 7-17 years-old patients Kid&Kiddo-KINDL parents questionnaire had performed. ALL survivors and their siblings who share the same sociodemographic environment had been compared for quality of life as the result of this questionnaires. The perception of child about quality of life also evaulated by his/her mother or father. The answers of children and their parents were compared to each other. Results: The number of ALL survivors >17 years-old and <7 years-old were not sufficient for evaluation. No significant differences could be found among life quality scores of 7-17 years old ALL survivors with respect to variables as gender, therapy type, risk group, time after the end of therapy, income status, having chronic illness, relapse history, and therapy center. Mean quality of life scores of patients were as follows: Physical well-being 75.27±19.9, emotional well-being 76.77±16, social functioning 79.21±18, family 82.74±19.7, self-esteem 60.73±24.4, and school 63.99±19.3. Mean quality of life scores of siblings (between 7-17 years) were as follows: Physical well-being 61.36±20.12, emotional well-being 85.22±11.27, social functioning 86.36±15, family 79.54±27.96, self-esteem 69.88±24.97, and school 64.20±14.54. Total mean quality of life score of patients and siblings were 73.12±13.4 and 74.43±11.28, respectively. Mean quality of life scores of parents questionnaires were as follows: Physical well-being 78.06±20.80, emotional well-being 77.13±15.76, social functioning 81.38±14.64, family 82.74±15.74, self-esteem 71.28±19.44, and school 63.70±14.60; total mean quality of life score was 75.51±11.60. When we investigated the questionnaires of patients and parents, we found that the self-esteem scores of the patients were significantly lower than the parents evaluation (p=0.037); we found no correlation in school subscales between patients' and parents' evaluation (p=0.673, r= -0.650). There was good positive correlation between physical well-being (p=<0.001, r=0.716), emotional well-being (p=<0.001, r=0.510), and social functioning (p=<0.001, r=0.501). There was moderate positive correlation between self-esteem (p=0.003, r=0.438), family (p=0.003, r=0.438) and total quality of life (p=0.001, r=0.474). When the results of patients and their siblings were compared, mean physical well-being scores of siblings were lower than the patients (p=0.049). There was no statistically significant difference between other subgroups: emotional well-being, self-esteem, family, social functioning, school, and total quality of life. Conclusions: In this study, we found that the quality of life scores of 7-17 years-old ALL survivors were not affected by gender, therapy type, risk group, time after the end of therapy, income status, having chronic illness, relapse history, and therapy center variables. Physical well-being scores were higher in patients than their siblings. The self-esteem scores of the patients were significantly lower than the parents evaluation. Our findings demonstrated that the parent evaluated self-esteem and school scores differed from their child. For this reason, we think that the parents should follow-up their children more closely for their self-esteem development and school performances. Key Words: Acute lymphoblastic leukemia, KINDL questionnaire, pediatric, quality of life